Sunday, September 11, 2011

A Tale of Two Claims.

This week marks the end of a fight with the Department for Work and Pensions, nee Benefits Agency. I wish I could say the war was done, but still we fight the DWP's decision regarding our daughter's care needs.

Her tribunal is in the next week...

Last year, on-top of my IBS and ME/CFS, I developed a rather nasty case of pompholyx - "hand eczema". I didn't know it was eczema at the time - a small cut got infected, and my hands started blistering. This prevents me from cooking or washing, and can sometimes make walking even harder (I also get it on my feet). It doesn't go away; I've had only around two periods of less than a week where I had no blistering or weeping in the last year. This put even more strain on my gorgeous partner and carer, Twitter's @dombed. We were filing a claim for DLA for our daughter (whole other story!) when we noticed that I also qualify. So I applied in September 2010 believing I should receive the Lower Rate Care component.

Having read other peoples' experiences and advice on the internet, I didn't expect it to go smoothly, and sure-enough, it didn't. At this time I was still undiagnosed, and my GP believed it to be contact dermatitis. He also wasn't fully aware of the severity, as I'd been attending the Nurse Practitioner owing to her increased accessibility, so his report wasn't particularly supportive. I, of course, requested a reconsideration and the DWP duly dispatched an ATOS Origin Dr to my house to investigate my claim. He came along, was quite pleasant & thorough, did his report and left. I didn't think there was any way that the reconsideration could go anything but my way after he'd seen my hands.

But again, things didn't go smoothly. The DWP simply ignored chunks of his report. He said my hands suffered "substantial impairment" in the report, but the DWP decision stated I suffered "slight impairment". He said I can't cook. The DWP said I can. I got confirmation of a pompholyx diagnosis, but the DWP didn't care. Off to tribunal went the case, then.

This was when the DWP decided now would be a good time to make life that bit more stressful, and perform a migration on my claim from Incapacity Benefit to Employment & Support Allowance (ESA). Great timing, DWP!

They didn't even make this simple; scheduling problems resulting in ATOS making threats of benefit cuts while the DWP tried to help find a workaround for us.

My ESA Work Capability Assessment went well. The GP seemed to understand my problems, and it went pretty smoothly for me.

Not-so-smoothly for the poor elderly lady sat in an empty waiting-room, while the staff were on lunch, having been sat there for 3hrs after being told to wait.

I hate waiting, so phoned the DWP to get the result of my ESA migration. I was told that I'd been placed in the Support Group, which I think made the call-handler confused when I then asked for a copy of the ATOS report. I planned on submitting it to the DLA tribunal.

Wednesday came, and off to Norwich we went for my Tribunal hearing.

Clerks were great - friendly and informative. The actual tribunal didn't seem to go very well.

It was held in an office-room, with a table separating the two chairs for the appelant from the three chairs of the Tribunal members. It was much closer quarters than I had expected. A male consultant surgeon to my left provided the medical advice; he was pleasant, understanding and helped cut through some confusion from the Chair. To the right was a Disabilities Advisor, who was there to provide life-impact advise to the Chair. She was also pleasant, but very quiet. She hardly said anything. The Chair herself was quite stand-offish and slightly intimidating. I felt like I was probably wasting her time.

The surgeon asked questions, then the advisor did, followed by the Chair who then said they'd decide that day and write with the decision.

I really hate waiting. When you're sick and/or disabled, you often have a lot of time on your hands with little or nothing that you can do.

This makes you think about things more than you would otherwise. Being told to wait for the post is like being sentenced to up to a week of stressing.

So Friday morning I rung the Tribunal Service, hoping they'd tell me what the result was. Turns out they're not allowed, so I tried the DWP. A nice lady at their call-centre said that the system only stated "appeal allowed" and didn't know what that meant. She said they'd sent me a form, but would ask me the questions and send an email to the department to hurry things up. She then asked if my bank details were correct, and if I'd been in hospital overnight since the appeal.

The post came - a brown DWP-ish envelope, creating hope that it was the decision. It wasn't. It was that ESA ATOS report. Only two days too late to be useful.

Did I mention I very much hate waiting? Friday afternoon I tried again, figuring they may have updated their systems. I was right - another nice DWP call handler explained that I had won my appeal and was being granted a 3yr award of Lower Rate Care, starting last year!

Irony upon ironies, while sorting the notes for this, the postman came.

With a Tribunals decision notice. Did you know that the Tribunal Service has no enforcement power..? Meaning the DWP can just ignore them if they really wanted?

So this case, which really wasn't that complicated because it only takes one look at my hands to realise the difficulties I face, took over a year to come to it's conclusion, and only did so correctly because my partner and I were willing to fight. I've no idea how much extra money this all cost, the lawyers, the decision makers, the Tribunal staff, but it shouldn't have cost it. I do know how much stress it's caused to myself, my partner, our family, but it shouldn't really have cost it either.

But this fight is done. For now.

Monday, August 02, 2010

Spring Fundraising

My name is Roddy Jenkins and I have eczema. As a sufferer practically all my life of mild to severe atopic eczema - undergoing various treatments of creams, ointments, emollients, oral medication and several hospital stays - I decided that I wanted to help raise people's awareness of this skin complaint. They say the skin is one the major organs of our bodies, yet for the most part we don't give it a second thought.

So, as a keen(ish!) walker, I thought I'd undertake a walk to hopefully raise funds for the National Eczema Society with which to plough into the research of eczema treatments. The walk I have set my sights on is no mean feat. It is the 640 mile long South West Coast Path, straddling the coastline of Somerset, Devon, Cornwall, and Dorset, from Minehead to Poole Harbour. If the walk itself doesn't kill me, it might kill off the bits of flab that I've accumulated over recent years!!

(Webmasters Note: Roddy has set himself a massive target of £10,000 so will need help. If you wish to donate go to http://justgiving.com/Roddy-Jenkins to make your donation. Good luck Roddy.)

So if you're around and about in the South West of England during Spring 2011, please come and say hello...oh and give your support!! It'll be much appreciated!!

My eczema has, as you fellow sufferers will no doubt be able to testify, been to some extent a blight on my life. When severe flare-ups occur, I often feel extremely self-conscious - often over fearing the worst - and I feel that I want to run away from society and hide.

Having said that, it doesn’t completely control my life; I am able to more or less go about my daily tasks.

In recent months, I have been fortunate enough to discover fellow sufferers on Twitter, as\well as support organisations like Nottingham Eczema Support (@eczemasupport). Please feel free to follow me on Twitter (@RoddyJenkins), where I would be more than happy to 'swap notes and experiences'

Posted by Roddy Jenkins : Web Address at 8:52 PM
Edited on: Tuesday, August 03, 2010 9:51 AM
Topic(s): Fundraising, NSGCCE, Posts from Roddy, Stories, Twitter

Thursday, December 31, 2009

Climb Aboard The Itchy Scratchy Express

What do I know about eczema? Well, not an awful lot to be fair...

I know how to live with it. I know some of the things that trigger my eczema and i am 100% confident that I could still dream up ways to scratch even if you took away my hands, arms and toes!

What I don't know is enough about the background to eczema - basically my awareness level currently stands at: "Oops, was that a bus that just hit me?" (thats "not" very aware for those who are struggling).

My awareness level is so low because I've lived with eczema since birth. Of course i didn't actually realise i knew so little until a dermatologist asked me what i knew - my best answer was a sarcastic one about it itching! So for the last 24 years I've learned to live WITH eczema, I've learned that flare ups do happen and that they will go away eventually. I've also learned that other people don't understand eczema and that goes right from kids (in school I got the whole don't come near me it's catching rubbish right to being called an Eczema Man, as in X-Men the cartoon - genius!) right through to adults which lead to my first rant that you may have read!

I now know through the help of others (mainly Twitter - thanks Amanda) and by researching various places on-line that the trick to eczema is not to learn to live with it, but to learn to live WITHOUT eczema, something I never thought possible!

My idea is to tell you what I THINK I know and then you can either tell me I'm right/wrong or I'll be carrying on looking into things and I'll report back to you and tell you more - either way, we all win! The main thing though is to raise awareness and hopefully get people talking to each other (or me - my email address is at the bottom if you click my name) as talking has certainly helped me :)

Think of this as riding along on the Itchy Scratchy Express to Enlightenment from somebody who may well be very much like you - Clueless (for now!)

Andrew

Sunday, November 22, 2009

Amanda talks to Heart 106 about Twitter

Our very own Amanda Roberts recently had an interview with Nottingham local radio Heart 106 where she spoke about her very successful Twitter service. You can listen to that interview right now on our podcast page.

Thursday, October 29, 2009

We’ve Done It

Congratulations have to go to Amanda who has just achieved her 1000th follower on her very successful Twitter pages. Her next goal, which we fully expect her to break, and very soon, is the 6000 tweets. Only 23 to go. Well done Amanda.

After a flurry of activity from Belarus, The Cook Islands and Zambia we have now broken another barrier. The 100 nations barrier. Excluding the home nation flags but not the United Kingdom, we have had visits from 101 nations around the world. Go and have a look at the Visitor Nations page for the full display of national flags.

To all our visitors from wherever you live, a very big Thank You for taking the time to look at our site, for embracing Amanda’s Twitter conversations so fantastically, for your subscriptions to the email alert service, your questions for the Experts and your wonderful support for our Awareness Day just a few weeks ago.

From the team - Hywel, Sandra, Amanda, Jane, Ruth and Colin

Sunday, March 01, 2009

NSGCCE Twitter Launch

Today we have launched on “Twitter” under the user name of “eczemasupport”.For those that are unfamiliar with the service that it provides, Twitter is a social networking and micro-blogging service that allows its users to send and read other users' updates (known as tweets), which are text-based posts of up to 140 characters in length. Twitter is a free service that lets you keep in touch with people through the exchange of quick, frequent answers to one simple question: What are you doing? To see what is currently happening on our account you can click on the large letter ''T'' at the top of most pages on our website. . To take part you will need to sign up to the twitter service. You can do so at http://twitter.com/eczemasupport/. Lets get everyone talking.